Tuesday, February 23, 2010

She has outgrown her preemie clothes but newborn are still a little big

most of the time her nasal canula stays put

but we often find her twisting just right to get them out!

Moms of preemies - don't go buy a $200 scale, buy a wii fit and you can use the baby stats app to keep track of your baby and can enjoy it yourself!

Us in the front seat hanging out waiting for our Sonic order to come out - what a life!

she is still so tiny!

Mary Lawrence comes and wakes me up at 6 am to put her princess dress on - today she added daddy's shirt

Playing on the floor of the Embassy Suites - I was too exhausted to tell her it was filthy. Our power went out at 2 am during last week's snowstorm. Usually we would start a fire in the fireplace and deal with it, but since oxygen and fire don't mix well - and the monitor battery only lasts 3 hours - I had to started calling hotels to find somewhere for our crew to go. If only we had a picture of all the heads turning to look at us as we walked through the lobby with our horse dog, two babies, bags of equipment and lots wires and tubes coming out everywhere. Oh the stories we will have to tell!

Monday, February 22, 2010

It's really hour by hour around here. Most of the time things are going just fine. But then out of nowhere we all seem to reach our breaking points at the same time. Justin tends to internalize everything. I tend to vocalize everything. And Mary Lawrence just melts down completely. We are quite a trio I tell you! Thankfully the weather was nice yesterday and we strolled to the park for the first time. We enjoyed chatting with some of the other families there and, for the first time in a long time, felt like a normal family. We so took for granted the simple pleasures in life before all of this. I hope that never happens again.

Thankfully Maggie seems to be doing just fine. She was evaluated last week by an Occupational Therapist and seems to be hitting all of her milestones for her adjusted age. She is turning her head to look at Justin when he walks in the room. I swear she is smiling in response to faces I am making. And she is lifting her head a lot. Things that I never really thought about with Mary Lawrence I really have to keep track of with Maggie.

We will have to do a little bit of therapy because the combination of lack of amniotic fluid and prematurity left Maggie's muscles really stiff. She was not able to move and stretch like most babies are able to do in the womb. So when she was first born she couldn't extend her arms and legs out past a 50 degree angle. At the time that was the least of our worries! But now we have to deal with it. Thankfully just her natural kicking and stretching has allowed her legs and arms to stretch normally now. Her muscle problems could have been much worse so I am thankful that hers are minor. But she still needs therapy which we will start soon.

My mom is coming this week - woo hoo. She is the only person that feels somewhat comfortable keeping Maggie. Okay, I take that back. I think it makes her extremely nervous. But she will do it cause she is my mom and I trust that she will call 911 if Maggie so much as hiccups too long. I taught her Infant CPR and have it plastered to my fridge so she feels a little bit more confident. So this week I can do fun things like go to the doctor, dentist, etc. I was hoping the weather would stay nice so we could go outside, but more snow is expected in Dallas this week. Where is Spring??? I need Spring....

Tuesday, February 16, 2010

We have a little piglet on our hands! We went to her checkup today and she is now 7 pounds, 8 ounces! So she gained nearly a pound in two weeks which is great for a preemie. We suspected she was going through a growth spurt because her six hours of sleeping a night have now gone back down to three hours. A big bummer, but at least it is for a good cause.

More exciting news...Her doctor said we could turn her oxygen down even more and in two weeks he wants me to turn it off completely and see how she does. If she can handle it for a week then he will remove it completely. She probably will keep her apnea monitor for a while but one less thing to worry about is nice.

Over the past month we have noticed that one side of her head is flatter than the others. It is most likely because in the NICU she was always in her crib and always facing the same direction. Now she only wants to turn her head one way, which is frustrating because that makes it worse! He said a helmet could be in order which, of course, I want to avoid at all costs. I just can't take any more equipment! But good news is that he said while she has the monitor I can put her to sleep on her stomach, which can help reduce the flat head thing. She doesn't like it at first but once she is asleep she sleeps soundly on her stomach.

I love her doctor. He is so calm and answers all of my questions. When I was waiting to make my appointment and was looking at the office bulletin board with photos of all the babies he has cared for over the years, he walked up and started telling me some of their amazing stories. Some of the babies who were born weighing 500 grams were now healthy toddlers. Another boy, who was born at 25 weeks and had a level four brain bleed, is now doing so well. He said, "this is why I do what I do." It was so touching, but then again anything makes me cry these days! Hopefully one day we can send him a photo of Maggie all grown up and he can tell people about how she beat all the odds, too.

Everything went so well at her appointment. That is until we left. Getting into the elevator I ran into another NICU family whose baby girl was next to Maggie for a few weeks. They are so sweet and as we were catching up she asked to see Maggie. I, of course, happily obliged and pulled off the blanket covering her carrier so she could take a peek. And then before I could look up the mother reached down and started stroking Maggie's face! It happened so fast and I was so completely stunned that I didn't even say anything. Not only would I never do that to a normal newborn, but a preemie who is so vulnerable? Come on. And the crazy thing is that she has a preemie herself! But it was quick and harmless so I tried to let it go. But then she proceeded to tell me that they had just been in the hospital because her baby just had RSV! I mean, seriously, are you kidding me?

As soon as they walked away I broke out the disinfectant wet wipes and started rubbing Maggie down. Then I got in the car and just started sobbing. Here I am trying to do everything I can to keep her well - not allowing a lot of visitors, taking Mary Lawrence away from all of her friends - and then something so stupid like this happens. I think I was mostly angry at myself. I thought after all I have been through I would have grown a little bit more gumption. .Why did I hesitate to say anything to them? I don't think I could have prevented it but I should have said something! I think I am way too worried about hurting people's feelings or offending anyone. Seriously, what is wrong with me?
I am still so upset with myself. But as one of my friends reminded me recently, I can protect her the best I know how, but in the end it comes down to doing what we did before - which is praying that God will protect her and keep her healthy and safe. You think the strong lesson I learned about entrusting our children's lives to God would have stuck, but it obviously hasn't! Sometimes it's easier to cover our children with worry than it is to cover them with prayer. But I am going to try and focus on doing the latter. Praying that Maggie can be healthy and I can be a bit more fiesty!

Wednesday, February 10, 2010

2. The snow falling out of the Dallas sky makes it fun to be home bound today.

3 My new best friend, named Wii Fit. Although after taking all my measurements and fitness evaluations, my Wii personal trainer told me my "true" age was 41. Not nice, but I of course blame that on four months of bed rest.

4. Maggie keeps going down on her oygen and the doctor thinks she only has another month or so on it.

5. Sweet friends who do thoughtful things like bringing over their extra craft supplies for Mary Lawrence so we can spice up our daily activities. Or just an email or phone call from a friend to say hello. Adult conversation is greatly cherished in my book right now:)

6. We have yet to drop Maggie. Sounds simple enough, but the constant transferring her from front of the house to back of the house often results in one of us getting tangled in the mess of cords and inevitably tripping and flying across the room. Depsite our clumsiness we have thankfully managed to keep her safe.

7. Justin enjoys staying up and feeding Maggie her 11 pm bottle so I can go to sleep early. The daddy-daughter time reminds him of every night when he would go up to the NICU from 10pm to 2 am because he didn't want Maggie to be by herself all night long.

8. I finally managed to take Blue to get a bath this week (thanks to a sweet friend who stayed in the car while I ran in the groomer) so my house doesn't smell like a dirty dog who has been digging large holes in my backyard.

9. After 11 days of going cold turkey with big girl underwear, Mary Lawrence is finally starting to tell me when she needs to go potty instead of wetting her pants, the couch, the rug, etc. (I'm sorry but doesn't everyone say it only takes 3-4 days of this???)

10. And, finally, my crock pot. I feel like a somewhat capable house wife when I can have something ready for dinner when Justin comes home from work, which is right when Maggie eats, has her second round of meds, needs her breathing treatment and Mary Lawrence is asking me for the 18th time of the day to help her find her Cinderella slippers, which I suspect she has purposely hidden so I will be forced to spend some alone time with her, albeit on a huting mission to find those teeny shoes.

Wednesday, February 3, 2010

Sometimes I'm not sure God picked the right person for this job. Yesterday I did the dumbest thing. I was in such a tizzy trying to get both girls ready to take Maggie to the doctor that when switching the portable oxygen tanks I forgot to turn on the new one. And I didn't know it until the nurse was checking her oxygen levels and it was way down. I kept insisting that normally she's been doing so great on her new lower settings but the nurse was not convinced. It was only when she left the room to fetch the doctor that I realized I hadn't used the plastic key to turn the lever once I hooked the new tank on- which is the step that makes the oxygen flow. Doh! Poor Maggie had been without oxygen since before we left the house.

I went running out to find the nurse, who thankfully had one of those darn plastic key and we turned it on. I babbled onto her about how this was my first time taking both of the girls out at the same time, and in all the commotion of leaving the house that crucial step must have slipped my mind. I was hoping for a "don't worry, parents do this all the time,' but it didn't come. Oh well. She probably thinks I am quite incompetent to be caring for such a fragile baby.

Nonetheless I was frazzled when the doctor stepped in to examine Maggie. I was trying to concentrate on his thoughts about Maggie when Mary Lawrence starts screaming behind me, "mama, poo poo, poo poo!". I turned around to see that she had wet her pants (why did I pick this week to get serious about potty training?) and she was not happy about it. In fact, she was screaming in her signature high pitch scream and fell on the floor in utter despair. Thankfully Maggie's sweet doctor kindly offered to stay with Maggie while I rushed to find the bathroom and get Mary Lawrence cleaned up. I scrambled through my diaper bag looking for the extra underwear and pants I threw in at the last minute in case of an emergency just like this, but of course I couldn't find them (they fell out in the car) so poor thing had to put her wet pants back on which made this nap-deprived toddler even unhappier. And who could blame her? Poor thing I dragged her out of the house during her nap time and made her stand in the waiting room for 30 minutes (all the chairs were taken) then wait in the patient room for another 15 minutes. She had all she could take!

So after taking care of business in the bathroom, we rushed back to the room and found the doctor cradling Maggie in his arms and talking to her sweetly - something you often don't see doctors get to do cause they are always rushing around. So I took a deep breath and we started over. Thankfully Mary Lawrence was so good for the remainder of the visit and then later as we did some pharmacy hopping trying to find this certain prescription. I think we have Maggie's prescriptions spread across three pharmacies now. Talk about convenience!

Anyways, Maggie's doing well. Thankfully my incompetence yesterday didn't do any long term damage. She six pounds, ten ounces now so that's good! He wants me to wean her down a little more off her oxygen. And he is going to let her go sleep more at night so last night we didn't wake her up and she slept from 11:30 - 5. Well done Maggie!

About Me

Musings on Hope was started in 2009 when I was put on bed rest for a very serious pregnancy condition called PPROM. At 14 weeks gestation my water "broke" and I lost all amniotic fluid. We were told that only a miracle could save our baby because without any amniotic fluid our daughter would not develop lungs, and even if she did survive, she would be severely disabled.

Doctors recommneded we terminate the pregnancy, but we refused. Instead my husband and I spent the next 15 weeks praying fervently for miraculous healing. Maggie was born at 29 weeks and miraculously survived. Our journey has been long and arduous, but nearly four years later we are continually amazed at what God has done in our lives, particulary in Maggie's. This blog has chronicled our journey through hospitals, specialists, therapists, and many unknowns. Trying to navigate these waters while still trying to provide a joyful and meaningful for my young children has been my goal all along.